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Invasion of the Body Snatchers
Through almost all of my life I have been living with an autoimmune disorder, and the plethora of symptoms that accompany it. I wrote this piece for a high school creative writing class to gain momentum and visibility. I do not crave sympathy from this piece, but understanding. Understand my struggles (and that of others) understand the ferocity with which I faight my battles. If you are ill as well, take this as inspiration.
I was never a particularly healthy kid in my early years (I wouldn't say I was particularly a sick kid) but I had a less than perfect health that declined over time. My skin was always questionable and often my biggest, if not only, source of suffering as a child. When I was very small I would occasionally break out in hives that would cover expanses of my body and build upon each other. They came with stress, they came with sickness, and sometimes they came with no reason straight out of the blue. They burned and itched and soon I had dubbed these flareups "The Itchies."
It wasn't until years later that I was told “The Itchies” were really flares of something called "vasculitis,” an autoimmune disease in which my body's T-cells would mistake my healthy tissue for intruders or illnesses and attack them just like your body's immune system would attack, kill, and ultimately keep you safe from harmful viruses or bacterium. With proper diagnosis, then came proper treatments in turn. We stopped treating these flareups with creams and lotions made for hives (which actually worsened my condition) and started treating them with prescription ointments and medications specially tailored for treating vasculitis in children.
A few years passed and by the time I was well integrated into my elementary school it had gone into remission - meaning flareups and symptoms had stopped or slowed down. I can't tell you the exact year that this happened as the whole process seemed so gradual that I didn't even notice it happening until it was over.
Those couple years after remission were quite possibly the most blissful years of my life, and quite possibly the most blissful my life would ever be again. In that time I had nearly forgot what it was like to even be sick. I lived a healthy life and things were truly looking up... little did I know that that which goes up must always come back down.
I could pity myself for being in the state that I am in now, I could wallow in grief and sadness - and sometimes I do just that - but I also feel I could be grateful for the memories I have from before I got here. It's easy to forget those memories, but also so tragically important to hold onto.
I don't remember my healthful years well, this has become such a reality that I can hardly imagine any different. The most obvious would be my skin sensitivities or lack thereof. Clear skin, the ability to use any beauty or bath and body product my heart desired, and the ability to stay outside for hours without developing a sun rash are some things I miss.
Another thing I remember would be the energy. I could go on for hours and hours on anything without pause. While I was never a particularly active child I was known to spend as much time as I had on whatever I put my mind to. I never lost my train of thought, got lost in brain fog, became sleepy, or had trouble focusing. I could churn out drawings and short stories in under a day at times.
My stomach was much less sensitive back then too. Just thinking back on things I used to do and eat makes me nauseous now. I had always loved sweets and would binge them any chance I got. Milkshakes especially. I liked my milkshakes super thick and super sweet. A special treat was when my mom would let me get a box of ice cream sandwiches from the store as this always meant that when we got home we would be blending them up with some milk for a one-of-a-kind chocolatey treat. Fudge was another favorite that now makes my stomach turn. Syrup, Oreo cookies, and chocolate of any kind are favorites that have since been moved to the "in great moderation" list.
As a child I often enjoyed sitting with my legs folded back and splayed out like a "W." On very good health days I can still catch myself doing it on occasion but never for long. I think one of the most potent things that affects me still today is when I try to cross my legs and sit back in my seat in class. Shifting weight distribution seems like such a small inconvenience until it becomes something you have to so regularly.
When I was young my mother would often chase me out the door with a coat in hand, demanding I wear it in chilly weather. My response was always, truthfully, "I'm not cold." Now, 10 blue fingers and tingling toes later, it seems as though the cold has found a way to seep deep into my bones where I can never escape it. My bed houses dozens of heavy blankets to lessen the shivers... until I awake soaked in sweat, fighting off a fever no medicine can tame.
Reminiscing on my healthiest years sometimes makes me sad and sometimes makes me disappointed in my current state. However, it's these memories that keep me holding out. If it weren't for the knowledge of how good things could be, I would have no drive to fight for anything better. The knowledge of the good leads to hopes for the great.
I think the worst part about being sick is the loss of dignity, the loss of self. Most things I suffer with are easily bearable and I often white knuckle my way through my episodes rather than bother with medications. I think sometimes that makes me look strong. Keeping up the outside fight keeps up a facade of strength, bravery, and resilience. I do a remarkable job of hiding the battles I lose, mostly for fear of being seen the same way I feel. Sick. Weak.
Aches and pains are quickly adaptable; our species has a talent for growing to withstand our conditions, and any rashes I may experience typically come in short spurts. Irritable bowels, as embarrassing as they are, can be solved with a dose of Imodium. Fatigue can be slept away. My physical battles are nothing outside of my ability to fight and often are not even let on to those around me. It is only the internal struggles that penetrate through my defenses and bring me crashing down every time.
It’s the smallest things, like not being able to keep up with the hustle and bustle of the world or sleeping through important events that encourage me to stay in bed and not even try to get up. There’s a unique feeling of weakness and incapability that comes with the lost abilities on days with heavy pain that make me want to give up entirely, and there are some days I glance in my mirror only to see a zombie staring back at me. The body I dress up and the face I paint for special occasions hide behind the purgatory holding me captive. Painted lips fade to dry, cracked skin. Bright eyes pale and deepen under exhaustion. My beloved figure bloats and contorts into an all too familiar hellscape.
There were times I feared I came off as vain and prideful of my body and my looks, and occasionally I still feel this way. For a while I was even learning the art of Belly Dancing because the way my body moved and danced was so mesmerizing and fun to watch and perform, but on some days that pride is sucked from me entirely. I slip out of my sweatpants and T-shirt and watch the grotesque figure in front of me feel its body, run hands over its scars, marks, and rashes, and wonder what happened to its beauty. I look away. The monster is too disgusting to watch, and I only return my gaze to the mirror once the monster has clothed itself again.
I went through an active phase where I was eating well, jogging, hiking, and camping any time the weather allowed. I owned my body and everything it did was on my command, but then it revolted. Sometimes it doesn’t allow me out of bed, sometimes it stiffens and creaks when I ask it to move, sometimes - most shameful of all - it doesn’t allow me to leave my bathroom, forcing out whatever nutrients I offer it like a toddler throwing a tantrum. As of late, my body seems to own me, rather than the other way around.
These things have varying effects on me. Sometimes it’s very strange, as you would expect to react similarly every time you get sick. There are times I get angry and vengeful, and times I become depressed and feel like giving up. Sometimes I am filled with spite and rage that I take out on my body or on those around me, pushing people away and then getting angry with them for leaving. I am a strong believer that one can grieve for not only those which they’ve lost, but that which they’ve lost. So occasionally I justify my adverse reactions by comparing them to stages of grief, grieving for my lost ableism much like one would grieve for a lost loved one.
Not all hope is lost, however, for I still have my good days alongside the bad, and thanks to these bad days, my days of health feel all the more lovely. I have my days in which all I want to do is stay inside and sleep, but I also have days with pep in my step where I go outside and run, I clean the house, I hang out with friends. Even in my darkest hours I know somewhere deep down that things are bound to look up. The world is always changing, I am always changing, and that is a beautiful combination with the potential to lead to healthier days, better medicine, and a stronger sense of self. My body owns itself now, but in time I will own it again. In time I will grow, I will heal, and I will get better. In time.
Not every story has a happy ending. Some stories were never meant to have one, and sometimes it’s up to us to write our own.
This is my happy ending.
I would wake up early. Birds would be singing and the sun would have just risen. I would slink out of bed and slip out of my pajamas and into a pair of shorts and a T-Shirt. I will run my hands over my body and feel skin that is smooth, clear, and free of wounds. Still, after all this time, I will marvel over myself in the mirror. Marvel over the way my skin catches the light and my body moves freely.
I will make a cup of coffee to start my morning and sit down in front of a bowl of cereal and a good book. Before I begin my breakfast, however, I open the small yellow bottles perched on my table and out would tumble a small handful of pills, different shapes, sizes, and colors. With a big gulp of coffee they would disappear down my throat. Sure, a medicine c***tail before breakfast won’t be my favorite part of the day, but it’s a tiny trade for health.
I would read my book and take my time on my cereal and coffee. Maybe I would go to college classes, maybe work, or maybe I will go nowhere. Maybe I will just sit in my living room, read, and listen to the birds outside. Later I will go for a run, I don’t know how long I will run but I will run. I will run and run and never be bothered by the activity. My legs will not beg me to stop, they will encourage me to continue. I will enjoy the sun on my face. The stickiness of sunscreen to avoid my sun rash will have not been a burden for so long I will have forgotten what it felt like.
I will come back home and take a shower and then maybe treat myself to a sweet snack. A milkshake perhaps? Or some fudge? Or brownies! I will gobble down my treat and maybe some lunch and pat my full (but not bloated) belly, reveling in the feeling of being well fed without being sick.
I will clean the house, I will water the plants, I will do whatever I damn well please, because the monkey on my back fell off long ago! The shadow that engulfed me has been enlightened, and the monster holding my soul has grown to a beautiful young woman. That woman will tell others about the blessings of a healthy life, and the strength of a sick one. She will tell her story to everyone who can hear it, paving a path of resilience, and behind her - following that path - will be those who have struggled, earning their way just as she had.
And perhaps one day I will have a child. They will be beautiful. They will laugh, they will yell, and they will cry. They will cry at sad movies, lost pets, and one day they may even cry over aching joints and upset bellies. They will hurt but never suffer, because they will have a mother by their side every step of the way taking that pain from them in any way she can.
Today I have hurt, today I have cried, today I have told my story. I am familiar with who I am. At one time I hated her with all my heart, and now I love her for who she is.